Living with an autistic family member

Living with an autistic family member

By Viriginia Archer


No two autistic people are alike, but can often experience difficulty with social skills and executive functions, and have sensory needs that are different from those in the neurotypical population.

Traits and characteristics - Autism NZ

You read the publicity about those famous people who are on the Autistic Spectrum, Albert Einstein, Steve Jobbs, Sir Isaac Newton and Michelangelo all geniuses, and the world would be not quite the same without them. But to those who live with the person who is on the Autistic Spectrum they tend to think how difficult it must have been for Mrs Einstien or Michelangelo’s family. Living with a genius yet living in the world of the autistic person. We have all heard about how Steve Jobbs treated his employees and ran his company without compassion or empathy. This is indeed the life of those living with the autistic person.

As in all spectrums there are those who have less symptoms and in the past were referred to as having asperger syndrome and others who are so far down the spectrum they are non verbal and may never progress through the toileting stage.

The person develops symptoms within the first two years of life, extreme sensitivity to light and certain sounds but not registering the sound or lights of a police or fire siren, can be some identifying signs. Obsessions for specific things such as red cars, bumble bees or the weather emerge with the higher functioning autistic child.  They still lack the usual social skills other children are learning, and will speak at length about the topic they have an obbession with.   As they grow they have no idea of their strength or the pain they may be inflicting on other siblings or a parent and will lash out for no apparant reason.

High and low spectrum autistic children appear to have no boundaries and when certain behaviour becomes anti-social this can have detrimental effects on family situations. They will take food from other children if they decide they want to. There is no understanding of yours/mine and certainly no understanding of sharing. Those lower on the spectrum or higher functioning autistics can  learn through repetition and reminders to copy and understand that certain behaviour is required to “fit in” to the world around them. By adulthood they are generally referred to as “a bit eccentric” or “on the spectrum”. They will still have trouble with humour and struggle to get jokes or inuendo, they don’t pick up social cues or emotion the same way those not on the spectrum do. They will never see that everyone is bored with the long explanation about the cloud formations and what they mean in terms of rain coming. People will  have moved on to other topics and the autistic person will keep bringing them back to their topic. Some autistic people will forget your name but know the number plate of your car. They will introduce you as  “this is my firend his number plate is TYM455”.

Of course this will lead them to enquire what the number plate is on everyone else’s vehicles.

For others there is the opposite and the obsession is learning the name of everyone they meet.

“We can call Mike and he will drop this off to Grandma”

“Mike ? Who is Mike?”

“The courier who dropped off that parcel for my birthday last month”

Someone they met for the first time can be as important as the person who has been in their whole life. This can be disconcerting for the person they met but also for the family member who feels hurt at times with the often uncaring attitude. If the autistic person is a spouse this will add a further difficulty due to the lack of empathy, due to the mainly learned social responses rather than spontaneous or heart felt ones. Initial attraction can be to someone who appears driven, motivated and focused and it is fair to assume they will approach all facets of their life like this, including those they love. But this tends to not be the case and the social interaction has been learned and is often forgotten once they are in a long term relationship. It may then be replaced with low tolerance for things that might interfere with their plans or create the need for change.

Structure and routine are very important for the autistic person from stacking the groceries in the trolly according to size or even alphabetically, to needing to have events planned and put in the calendar weeks ahead of them taking place. This in itself can create intense drama if some of the details are changed due to circumstances. Changing venues or times can be very irritating for the autistic person who has no concept of why someone else’s plans have had to impact on them. There is an expectation that they will change it back and if not, the autistic person may not go at all rather than fit in with others for what ever reason. If they do they may continually bring up the change forced on them every time this person is mentioned. Years later they will comment on the fact they are “always changing their plans”.

However for those who do live with an autistic person there are rewards too. They are often brilliant at something and can be extremely successful in their chosen field. If they do get a diagnosis they feel immense relief because they know they are different and do genuinely want to fit it. They will often put huge effort into understanding where they fit in the world and will put in the effort to meet their families needs. Once you understand that they have a different way of processing what they see and feel you can often decipher their thinking and life while different, can still be fun and enjoyable. An autistic woman described her thought process as “at a specific moment in time a speck of dust falling through daylight can be more important than a train speeding down a track towards me”. Reminding yourself of this helps you cope with the thinking and actions of an autistic person. The ability to process, prioritise and understand the social nuances that the general population do, is missing, to a lessor or greater extent. But that person is still loveable and part of your family. 


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